Peg : I wanted to ask you all what you think... - PSP Association

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Yvonneandgeorge profile image
42 Replies

I wanted to ask you all what you think about having a peg fitted, the pros and cons of having one.  We have heard so many different stories about having a peg fitted, George is going down that route, couple of the children are saying not a good idea, please I need some advice on this, I am feeling really confused.  DN came and spoke to us about palliative care, feel like things are moving so fast.  HELP !!!!!!!!!    Yvonne x

42 Replies
Escada29 profile image

Hi my partner has stated that he would not  like to have his life prolonged by a feeding tube. Palliative care is to make the person comfortable until they pass away naturally do you really want to prolong his life and suffering ?

shasha profile image
shasha in reply to Escada29


abirke profile image

In December of last year I took B into his drs office just to weigh him....He had lost 20  lbs in months, weeks , I don't know but it was quick! we went home and that afternoon After some prayer, I called the dr....and informed her that we needed to do something fast...a PEG tube. Within 3 days he was getting his nutrition without spending more calories literally choking his food down!  He is fairly active (when I get him out of his chair and doing stuff) and VERY healthy, He is able to be sustained through few drugs and Osmolite..the liquid nutrient ....It was easy for us to change over to the tube because of Bruce's good health...If your husband can help with such decisions I encourage you to rely on his input in the idea.  Good Luck, which ever way you go , don't let any emotional negativities creep in such as guilt or anger. You will make the best decision....take comfort in knowing you are doing the best for your husband.

Many hugs to you .  Remember, you ARE doing the best thing,


Yvonneandgeorge profile image

Yes 2 of the children are saying you are prolonging his life when the PSP has taken over his body, such a hard decision. Yvonne xxxx

Satt2015 profile image

Hi Yvonne

This is something I've been pondering

I'm hoping my dad says no because my view is, it's just prolonging a pretty pointless existence 

Sorry, no offence meant just my view. X

Amilazy profile image

M has had a PEG for over a year now after losing swallow function and 25% of body mass.  The PEG allowed her to regain weight and health.  The issue is not prolonging life for life's sake, it is improving quality of life for the time we have together, M is not and was not without mental function and likes life, the PEG allows us both to build on memories.  The PEG allows me to take M out, feeding is easy and private so we have seen the spring flowers at Bodnant Gardens for 2 extra years and grandchildren.

It is a decision for both of you but mainly the patient if they are tired of life then force feeding via a PEG is cruel and should not be carried out.  But if they still enjoy seeing family and friends and can understand what is going round them then a PEG is a boon and helps remove choking.

Do not be put off a PEG it is a fantastic life giving opportunity.

Best wishes Tim

NannaB profile image
NannaB in reply to Amilazy

Hi Tim, our posts overlapped and we seem to have said much the same.  I wasn't copying...honest X 

Amilazy profile image
Amilazy in reply to NannaB

No snags, glad Colin still happy and getting out with you.

Best wishes Tim

easterncedar profile image
easterncedar in reply to Amilazy

Your perspective is so helpful, Tim. I generally would have said no, except for you. Xox ec

NannaB profile image

Yvonne, this is a difficult one isn't it.  I didn't want C to have one but when he was first diagnosed, he said he did but only when absolutely necessary.  At the end of last year he started to eat less and choke more.  The hospice tried to get him to have a PEG in June 2014 but Colin indicated no and as he was still eating, I agreed.  As he wasn't getting the nutrition, he started to have awful open sores on his bottom which wouldn't heal. I asked him if he thought it was time to have a PEG. He was very sore and uncomfortable but still a good weight so I thought if he didn't have a PEG it wouldn't be a quick comfortable end as he was still eating something. He agreed it was time and it was fitted in January with no problem. Within 2 weeks the open sore on his bottom was healed as the feed is packed with nutrients and calories. I was worried that if he became really ill, he would then have to be kept being fed as there was the means but after having it explained by the nutritionalist he has indicated that he doesn't want to be fed if he had an infection or in other critical circumstances and she put it in writing.

Although initially I was against the PEG I'm now very pleased he has it. Someone seeing him may say he has no quality of life. He can't do anything other than squeeze my hand and sometimes do thumbs up but I can see in his face how he loves having others here. I always ask him if he wants to go out and he will indicate he does.  I take the feed with us when we go out and it's much easier than trying to find something suitable for him in a restaurant or coffee shop.

Our eldest son was against it thinking it wasn't fair to keep him alive with no quality of life but agrees his dad looks much better now.

If George can tell you if he wants one fitted, I would go by what he wants.  If he can't, go by your instinct. You know him better than anyone, even your children.


Clarag profile image
Clarag in reply to NannaB

Overall I would agree with NannaB. PEG feeding is not intended to prolong life & it can be used to supplement oral nutrition.  In an ideal world (obviously in reality that would be PSP free...) discussions & decisions about these issues should be in the early days - mindful that nothing is set in stone & people can change their mind. Regardless, whatever decision is made now, has to to be whatever is in Georges best interests!! Perhaps the window of opportunity has passed. I apologise if I sound 'flipant'; i do know what it is like to consider such matters as my dad has been living with PSP for over 10 years. Take care

vlh4444 profile image

Yvonne, I think only you and George can decide what is the best course of action and that judgement will depend entirely on what is George's quality of life overall.  If he has a reasonable quality of life (as far as PSP allows) apart from the eating, choking and weight loss issues, then the PEG might just make him more comfortable for a bit longer. But, if the other issues have become almost intolerable now, then perhaps it would just delay the inevitable.  This is the best I can offer but D has not reached this point yet so it is very hard to know what is right and others who have made the decision are in a better position to advise.

Do hope you find the strength you need to make this decision, it must be so hard.

Vicki xx

Yvonneandgeorge profile image

Yes I understand the decision has to be George's, I have tried talking to him, but he just seems to ignore me, which is difficult, I can see the pros and cons of the peg, when the dietician comes on Wednesday, she is going to talk about the peg, she is going to weigh George, and leave us some literature on peg feeding.  Things are moving so fast, George keeps saying he is going to die soon, and he has lost the ability to laugh, like he use too, so very sad, don't feel like I am coping to good. Yvonne xxxxx

easterncedar profile image
easterncedar in reply to Yvonneandgeorge

Hard time. Hang on, Yvonne. We are all in this, this life, together. Love, ec

in reply to Yvonneandgeorge

Oh Yvonne poor you.  Chris hardly spoke at all for the last few weeks of his life but one morning as he was being fed breakfast he suddenly said "This week I am mainly dead".  Double shock for daughter and me: firstly the fact that he spoke what was for him such a long sentence and secondly the subject matter.  At the time we thought he'd be here for a while yet but he died about two weeks later.  C and I had the discussion about PEG feeding when he was first diagnosed and he was adamant he did not want tube feeding.  I honestly don't know how you can have that discussion now when George is not really communicating.  As others have said above it looks as though the decision may be left to you.  Good luck.

Heady profile image

Yvonne, I am so sorry. I did write a long reply, but , as usual it got lost.  Too tired now, but will reply in the morning.

Lots of love


Auddonz profile image

My hubby said he does not want to be fed that way. I am looking into getting him a living will and power of attorney.

Audrey xoxo

easterncedar profile image

So much depends on the quality of life you are extending. My father in law, who had throat cancer, got several good months out of having a peg, even drinking his evening glass or two of wine through it.  My aunt, who had had several strokes, demanded after the last no artificial feeding of any kind when she had the chance, (the tube they'd inserted fell out, so they had to ask; if it hadn't, they would not have had to agree to her request to remove it) and so was able to die in peace at home with full awareness of her decision. That's part of the problem, of course. Once it's in, the patient loses some autonomy. But if the patient is able to engage and enjoy life, the peg may be right;  if it only serves to prolong suffering, well, why do it?  I think I would prefer to go without. My guy wants it, if he is able to choose.

Oh, it's hard. You must go with your heart. I wish you peace with your decision, and send hugs. Live, ec

sammy90210 profile image

Hi Yvonneandgeorge

I will give my own perspective (summary: not recommended)

(Please note I respect everyone's opinions - the following is my own personal experience)

I have written a lot about it here but since I feel strongly about it, here it goes again - hope I can be of some help

My dad aspirated on a few drops of water and the neuro said a PEG would improve his quality of life - he also stopped his carbidopa-levodopa (sinemet) because it gave him horrible spasms - essentially it meant that my dad turned completely vegetative and he was someone who loved life and food... I left my job to take care of him 24/7 - every minute of every day was a painful struggle... for me it was torture to see he could not eat, drink or communicate - I didn't know if he wanted the PEG or not, in the beginning he was OK with it but what if a week later he had had enough - he couldn't talk or communicate (since thoughts are all jumbled up in PSP patients' heads) - essentially we were maintaining a vegetative state and only waiting for him to aspirate or develop pneumonia or a bad infection or cancer....

2 months later, his Sinemet was resumed and he started eating, drinking and communicating somewhat - we, as a family made a decision to use the PEG only for medicines - in that sense it was great, he did not have to swallow bitter crushed up medicines...

5 months later, he aspirated on water and had 3 infections one after the other and finally passed away during the last one - during this time, we were still PEG feeding him - he had gotten to the stage where he couldn't even lift his hands or squeeze my hand or anything... and he developed a stage-3 bed sore just within the last 3 days - what if he had recovered from the infection and was in this completely vegetative state - would he have wanted that? I would never want that for me, to be like that.... so how could I want the same thing for my father...

Essentially, it depends on what stage George is... 

- can he indicate if he wants a PEG?

- can he walk or move about a little bit on his own?

- can he talk? can read a newspaper? can he use the internet or phone?

- does he enjoy or at least partake of life?

- does he seem upbeat and cheerful in spite of his disease?

If the answer to all the questions above is yes, then it can be put in I guess. But when do you stop feeding him - please note that no matter how painful or distressful it is for you or the family, you just cannot stop feeding him.... I am not talking about the legal or moral aspect but it just feels so wrong....

PSP affects people differently - some people lose speech and swallowing capabilities but the rest of the body functions go on in a somewhat normal state - they can indicate they would want a PEG - my father lost almost all his capabilities at the same time - even with the Sinemet, he was in almost completely bed bound - and this was a guy who wouldn't sit at home for more than a half hour but drive or walk around the neighborhood...

Please note, with a PEG tube, there is a chance of fatal infection - if that doesn't happen and it works, the issues increase manifold - e.g.

- sometimes the patient tries to pull the PEG out but doctors and caregivers try to restrain them, using a cloth belt e.g. but sometimes the PEG tube is put in incorrectly and it causes the patient pain, or maybe the patient is horrified at this foreign invasion or maybe it's just itchy or maybe he is confused - how do you know what he wants? will he be able to communicate?

- it's not easy maintaining a good diet balance - you will have to watch his weight and vital signs every day and talk to a nutritionist every few days to adjust his feed - is the nutrionist available so frequently - will you or someone else be able to take out time that frequently

- maybe he can eat and drink a bit now - but it will get worse with time - with the PEG, the patient may stop eating or drinking altogether since they know there is an alternate source of nutrition - now their mouth is dry and full of thrush and dry phlegm - they may get cuts inside their mouth, but they cannot drink water or produce saliva to heal it - you will be afraid to put a mouth gel inside because that will produce fluid which can lead to aspiration - plus some mouth gels hurt like hell on mouth sores - so the mouth sores will get worse with time, they will turn black and red - and not heal - there may be too less or too much saliva - nothing is guaranteed to work really, sometimes people use patches, which can cause burns or the doc recommends to give botox injections in the tongue... 

- PEG tubes do not remove the chance of aspiration - my dad aspirated 3 times with a PEG tube - twice he had to be rushed to the hospital for deep throat suctioning, which is like water boarding - only the patient is mentally confused and scared too - and it can run for as long a few seconds to 2/3 minutes - and it can cause bleeding in the throat - but the patient cannot drink water or take medicines to help heal those wounds - because again, fear of aspiration

- patients become more and more bed bound, which means you have to watch out for bed sores - can you turn the patient to their sides every 2 hours?

- patients run a very high risk of constipation and hemorrhoids - can you try and control these? sometimes laxatives don't work, sometimes they cause diarrhea - do you have the time and patience to monitor and change these - sometimes the patient will be horribly constipated and they will need to be given enemas - are you OK with that? (my dad's palliative care doc suggested one enema a week, just in case)

- the patient has a dry throat, as I mentioned above, plus very dry ears, which can be very painful - plus dry and watery eyes at the same time

- as the patient stops using their mouth for swallowing, they start losing speech rapidly and cognition too - it will take only a few days...

- plus, one very important thing, for me and my family (and there are others here too), only the PEG feeding process was really distressful - it felt so artificial and even if he wanted us to stop, he couldn't tell us

One very important thing - everything I have mentioned above happened to my dad - thankfully the worst happened in the last few days of his life, but he was lucky in that sense

From my perspective, I did everything in my power to make him comfortable - we were 3 people doing 24/7 duty with him - I even had doctors and nurses visit at home so he wouldn't have to go to hospital - but I could not relieve even 10% of his problems which were exacerbated by the PEG tube...

We all want to do the best for our loved ones but if we don't have the strength or the energy, we will only be making their situation worse - I am in my 30s and in good health - and I was close to a nervous breakdown at least 3 times in the 7 months I took care of him - it's hard enough already, putting a PEG tube in a late stage patient, who has already lost most of his faculties is only making it hard for him and for the caregivers too 

Lastly, I asked this question elsewhere too - here is a response from someone (I don't know him personally)


(I'm not a doctor but I am a speech therapist who currently works with swallowing disorders in people with neurological conditions)

The best guidance I know of on this is the Royal College of Physicians (UK) report on Oral feeding Difficulties and Dilemmas:

I don't think it's a humane or not humane thing to do. I think that for some people it's the best thing ever and for some people the benefits are outweighed by the burdens.

In the UK we are moving away from the assumption that everyone will have a PEG tube. In fact, in the light of this report, I would say that the majority of people with dementia won't have a PEG tube.

However, there are people where their swallowing is impaired out of proportion to their overall condition. They might have a reasonable quality of life except for their very poor swallow, and they might be able to walk, do a lot of things independently but just not be able to manage to eat enough to maintain weight. Or maybe mealtimes have turned into an exhausting, stressful situation for everyone concerned, but the person still shows signs of enjoying other parts of their life. In those cases, a PEG is probably humane.

However, if the swallow is impaired in the context of advanced dementia and especially if the person is showing signs of significant distress, then I don't think it's humane. We are increasingly seeing this as a way of prolonging dying rather than prolonging life. And in fact the evidence suggests it isn't very good at prolonging life or preventing aspiration anyway.

If you want an American perspective, our NHS Trust have also adopted these guidelines from the American Geriatrics Society:

Good luck. It's a very difficult decision.

Amilazy profile image
Amilazy in reply to sammy90210

Thanks Sammy90210 a very informative and comprehensive post on PEG.  I can only agree with many of your points especially, care against infection and maintenance of the integrity of the wound site.  The issue of the PEG tube being pulled ( it can itch) can be solved by micropore tape or Velcro belts yes M has had 2 forced removals of the tube early on when caught in clothing but since taping the tube, touch wood, no more disasters, immediate reinsertion of tube and visit to A&E for check was the solution.

As M does not have dementia and though now all but bed ridden her quality of life was improved by the PEG for well over a year.  I agree that the patient wishes are paramount but what is thought by them at the start and what happens as the condition progresses can change, they need explanations from professionals and then time to think.  Quality of life is essential as the guide.  M only had major swallow loss which caused very rapid weight loss, her other PSP symptoms were progressing but not catastrophically so PEG made good sense at the time.  

Would we make the same decision today if she had not got a PEG?  I do not know as she has so little communication, no mobility and other issues, She looks so frail.  But she is a fighter and hangs in no matter what so I think she would want the PEG.

I disagree with your summary about being no to PEG but that is personal point of view and from reasonably good experiences that I think all things considered for a middle stage PSP patient a PEG can offer improved quality of life.  

Thanks again for such good post.  Tim

Heady profile image
Heady in reply to sammy90210

Gosh Sammy! That was pretty powerful!  Thank you.  We are not far off having to make the same decision.  Your words have certainly given me food for thought!

Lots of love


showaddy profile image
showaddy in reply to sammy90210

Thank you so much Sammy for the above - it has helped me understand and think about things. We are getting to the stage where it may have to be considered xx 

easterncedar profile image
easterncedar in reply to sammy90210

Thanks, Sammy. I appreciate very much your thoughtful sharing of the hard lessons you learned I hope it helps you to know that you are helping us. Peace, ec

Katiebow profile image

My goodness Yvonne, I do not envy your position at the moment and will have the same dilemma in the future. Fitting of a PEG seems such a difficult decision and I keep changing my mind on the best way, more through fear of Bens suffering when the time comes to make that decision. At the moment Ben says no PEG but what if he changes his mind and can't communicate his wishes. Thanks for all of the input giving different perspectives on such an immotive subject. Kate x

Heady profile image

Hi Yvonne,  S and I are almost there as well.  S has been going downhill, like express train out of control, recently.  Thankfully, this week, he seems to have stabilised and even improved slightly.  Our problem is fluids, he chokes for England on a drop of water, but can still eat anything food wise!  We have seen the dietician, S thought that a Peg sounded alright then, but recently, after a bad choking episode, I ask if he wanted a Peg put in, he said NO!

One part of me says No Way!  I don't want him kept alive artificially, on the other hand, neither of us can cope with the constant choking and awful noises he makes.  Mealtimes just blend into one another, he doesn't like me feeding him, yet, just looks into space and ignores the plate in front of him! We are in the middle of breakfast now, it's only taken an hour and all he has eaten, is half a bowl of Oatibix, hasn't drunk anything, won't eat his fruit.  Peg feeding, I know won't be quick, but it's got to be better than this existence!

I read Sammy's reply to you, that was a very powerful message of how life was for them.  Not something any of us would want to go through. But others, like NannaB, AVB and Tim are very positive.

I suppose all you can do, if George is not capable of making the decision, is go by  the medical advice. Although, I do believe that deep down in our gut, we all know the correct choice for ourselves,  that's the one you have to trust. Because it is George and your lives we are talking about, nobody else's!!!

Yvonne, if it's you that has to make the final decision, do what your instinct tells you, not what others, who don't know George, THINK is right.

Sending big hug and much love and hope you find the strength from somewhere to make the right choice for you both.

Lots of love


Finoni profile image

You could perhaps have the palliative care team help with the decision. They are not just about end of life, but can be helpful with determining each patient's preferences in any given situation. We see a palliative care doctor regularly and my husband could have years left. He can still more or less walk, talk and eat normal food.  (He has said from the beginning "no PEG!!".)   The palliative care team are ask the difficult questions in a gentle way and may be able to find out what George wants and relieve you of the burden of making the decision.  

blackcushion profile image

My mum didnt want a peg fitted and I think mum made the right choice its stressful enough for the family dealing with the care , meds everything I couldnt of coped with peg feeding to. Nearly had a nervous breakdown with all the emotional side of it, we all want our loved ones round for ever but when the quality of life has gone its cruel to keep them alive and we got to let go , lost my mum nearly 2 years ago and I still miss my mum and give my right arm to have her here now. Thinking of you its not an easy choice to make take care x

Doglinton profile image

What a dilemma , Yvonne. One most of us will need to consider at some point.

Chris made it clear he doesn't want it and has signed an Advance Care Plan but could change his mind. I have been thinking a lot about "quality of life ". As Chris has poor hearing anyway and his eyes cause him problems, I fear it will not be good as he becomes less mobile. He enjoys his food, few choking episodes, but that will be a huge change.

Reading all the thoughtful comments is useful and I hope you are able to make the decision. Don't feel guilty whatever decision you make. You can only do your best.

Hugs from Jean x

NanBabs profile image

Hi Yvonne,

We are soon to be faced with the same decision - and, like you, I really don`t know what to do. P is not capable of making the choice and has never participated in any discussions about his health, he just sits and `listens`. The most he says is`I`m not well, am I ?`.

He can refuse pain killers and he can say NO quite forcefully but I really don`t think he understands the implications about PEG feeding.

I am dreading making the decision and my thoughts are with you.


Kevin_1 profile image

My partner is not there yet. Her view is she would like to die with dignity now.

She has made it clear to all of us she does not want a peg to prolong a life without dignity. 

Everyone is different. I think there are no rights or wrongs on this one.

JAYNIE62 profile image

My dad had one fitted but suffered from pneumonia caused by the feed going too fast through it.It also became dislodged, causing peritonitis,rendering it unusable and my father suffered more than if he hadn't had it fitted.It was a last resort and I personally wouldn't recommend it if they are already talking about palliative care.Your loved one in my opinion is better being reassured by your family and comforted in his last weeks.This wretched illness is soul destroying to see.Thoughts are with you. Xx

Yvonneandgeorge profile image
Yvonneandgeorge in reply to JAYNIE62

Thank you all for your responses, sorry it has taken so long, George has be unwell all day he must of called me 100 times, he had a pain in his groin, it was bad and he could not stop wriggling about, phoned 111 doctor called back, they are going to visit but said it could be over 6 hours, anyone else's partner suffer with groin pains?  We have a lot of thinking to do re: the peg, tried to talk to George, but he just looks at me, then he said you decide, I said it is not my choice, you need to decide, he has not really been talking much lately, especially to me.  Thank you all once again for your views, looks of soul searching to do.  Love Yvonne xxxxxx

Julieandrog profile image


if you have not yet been referred to a  hospice do asap, they will have these difficult conversations with you both and are worth their weight in gold. rog has said no thank you, but has been reassured by the hospice that there are meds to keep him comfortable. also power of attorney for health if you have'nt got already.

julie x

Kelly55 profile image

Feel for you Yvonne, it's a very difficult decision. Id always thought my mum (also Yvonne 😊) wouldn't want a PEG but once options were discussed she did want it! I think once you get to thinking of end of life our opinions may change... Mum was terrified of idea of the op though and we found several good you tube videos which explained the procedure and how to use the peg so mum could see how it worked. Mum was meant to have it in October but had to cancel as was in A&E for atrial fibrillation diagnosis. Then she started losing weight over Christmas and I was panicking as she wasn't eating and drinking much. PEG rescheduled and mum started Mirtazapine for low mood. Side effect is appetite stimulant though and her appetite returned, she also started Stalevo 150 3x a day recommended by PSP neuro professor, and this seemed to perk her up too. Mum had the peg and although she has a few times said she wants it out, and it irritates her a bit in the dangling tube in the way sense, otherwise it's been a positive ! Mum has to take a lot of meds a day for various conditions and using the peg to administer majority of meds made a big positive difference. No more trying to swallow large tablets. Also means I can keep her hydrated and put laxatives and cattarh medicine through it. It's helped with her bladder as now has no UTIs (mum also has a daily antibiotic) and oases water regularly. And now has almost daily bowel movements ! (Used to be one a week!) she's also continuing to eat well and so we haven't had to use peg for nutrition but her health has improved after it. BUT it definitely depends on what quality of life it can add. The peg has allowed mum to be healthier which will sustain her for longer. Mum can still walk a bit, eat soft foods and talk (albeit difficult to understand) so for her was the right choice. We are in process of doing POA and living will so need to find out if mum wants peg used to sustain life in end stages. I'm hoping she says no but again her choice. She's indicated she want doctors to make final decisions not family which makes me bit nervous as I know they have to sustain but for now the peg was definitely right thing.. Hopefully won't regret decision further down line but now it's improved her quality of life. All the best to you both xx 

NettieClare profile image

Hi all, never commented on here before but have been reading the posts for many months to get an insight to this disease have found the posts a godsend - thank you. Dad has PSP & also mixed dementia my sister & I are looking into POA for health & living will at the moment. Initially dad was an adamant no when we have discussed a peg (on his good days when he can communicate with us) he is not in the dark when it comes to a peg my mom had stomach cancer & had a peg fitted (unfortunately she passed away be it 18 years ago after a 2 year battle - bless her) - my brother also had one fitted be it temporary (had secondary throat cancer) he his fine now gone 6 years still has problems with his mouth lack of saliva etc resulting from radiotherapy. 

Now for some reason when we mentioned the peg again last week dad has changed his mind, you could see him thinking it over & now said if he has no choice & he is not able to swallow then he would like it fitted. Not sure how long we have until we have to proceed with this Dad has been having puréed food but hates it refusing to eat it so back on fork mashable & has his drinks thickened (don't like this either) does have choking episodes but while he can still make his own decisions & knows the consequences don't want to take that bit of independence away from him. Very difficult decision to make.

Nettie x x

GonnaMissDaddy profile image

I get in these moods and read about PSP for hours and hours at a time. After reading this long thread, I didn't see an answer to what I'm wondering. I understand about the decision being based on 1- (If possible..) the PSP sufferer's wishes or (if #1 isn't possible) 2- the stage of PSP meaning the quality of life that's being prolonged. What I wonder is, wouldn't the patient then die from dehydration long before starvation? I mean, dehydration would happen in days. Or is the patient still given fluids? Is the actual cause of death listed as dehydration or PSP? (Side note: I've been a caterer and moved in with my Dad (PSP sufferer) and his wife almost a yr ago. When I learned the disease can cause him to lose weight and etc, I added a good 10 lbs to his very healthy weight haha by cooking all his favorite foods! He loved it at first but lately his appetite is waning somewhat and thanks be to God he's not choking. What happens, instead perhaps, is he has to blow his nose several times when he eats and if he's not told, well it's nasty to see and nasty for him too even if he's not very aware of it. (Sparing you more details.) Sometimes he's aware of it and blows his nose without being told, during dinner. Come to think of it I haven't heard of anyone else with PSP having this symptom, but.. I've digressed. TO YVONNE: I'm so sorry for what you and your George are going through. Will say a prayer for you both!

GonnaMissDaddy profile image
GonnaMissDaddy in reply to GonnaMissDaddy

Meant to say too, being a caterer, to watch ANYone, let alone my own dad, starve, I can't imagine, my brain refuses to consider the possibility. <sticks head back into sand>

Yvonneandgeorge profile image
Yvonneandgeorge in reply to GonnaMissDaddy

I think they can still have fluids put in to them, it must be there wish not to have the peg, it is sad but George has decided not to have it, he can still change his mind at a later date xxxxx

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Yvonneandgeorge

I can understand how you feel, I felt like I was letting George down, but is was he decision, I sad to the children I feel like when the time comes we will have to take it from there. This horrible illness, is so hard to live with, a while ago I thought George did not have long to live, but the last few weeks he looks better, you never know what tomorrow will bring, he has tried to stand up by himself the last couple of days, he could of had a nasty accident xxxxxx

Heady profile image
Heady in reply to GonnaMissDaddy

S suffers from a runny nose, every morning while eating breakfast. Bit like a tap full on! Starts when his bowl is put down in front of him, stops as soon as said bowl is taken away! Doesn't matter what is for breakfast, or how long he has been up. Not a meal to be eaten in public!!!

Lots of love


Doglinton profile image
Doglinton in reply to Heady

Chris does too. I have always to keep my eye on his nose when he;s eating. Especially in company as he isn't very aware of it.

Jean x

Yvonneandgeorge profile image

Oh dear George does not suffer with that, just keeps making weird noises and calling me xxxx

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